Hi all ! sorry I have not been on for a while, been fighting our dredded terrible two's, pmr/gca! these two devils jumped me a year ago, I started on 40mg's pred, and now am down to 5mg's, met with my Rhumy on Tuesday, he says I am doing very well, no sign of either of the little ×+@×=#$😨 he is keeping me on 5mg's of pred, and to follow up in three months.
On previous visits, he has tried to get me on Fosamax!! My husband did a lot of research, and we decided against it! due to the terrible side effects! the next visit ( second ) he tried Reclast shots! we ended that foray, with research, and concluded too risky!, yesterday, he proposed Prolia! we are in the research process on this one but I have to say, it's chances are looking grim! it has about three pages of contraindications!
I do have a little osteoporosis, i'm 81, good health, exercise daily, am I making the right decisions? What do you guys think?? Eager to know!
Kentishgirl
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Kentishgirl
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Hello, why is your Rheumy pushing all this stuff at you? I'm not an expert but you appear to be doing very well so far. I started with Pmr early 2016 the other little b*******d arrived two months later, I'm back to 10mg of pred due to a recent flare of both. I've no doubt the people who have more experience and have got the t-shirt will be here soon with some good advice. If you have doubts about the latest suggestion don't take it. Your body and you have to deal with any side effects. All good wishes. 💐
To me, you have done really well, you're on a low dose of pred and you have obviously done all your homework and research and are well informed. I personally would ask for a dexascan before agreeing to anything. This can be arranged with your GP.
From my own point of view I started with PMR in Nov 2014 and GCA arrived Jan 2016. I am still on a much higher dose of pred than you- at the present time 18mg gradually going down to 17 mg. I have only taken the suggested Alendronic Acid twice since Nov 2014 and then like you made an informed decision not to take it. I did though arrange to have a dexascan and the results were fine. It's obviously a personal decision but I think it's sensible to have the dexascan just to help you make an informed decision.
I think that you are doing so well that I would leave well alone. I am sure he means well but 5 mgs is too low to do damage. In my view he is trying to polish something that is already shiny
I agree with the others. And although age is not usually something we welcome in this case it seems that the older we are the less effective the bone meds are anyway! So, stand your ground. But add a vitamin k2 supplement to what you're doing if you haven't already. And what a good rheumatologist he is regarding your taper ☺
"Conclusions Ever use of oral bisphosphonates was not associated with a decreased risk of hip fracture in women aged 65 or older as compared to never use. No association was observed between hip fracture risk and cumulative duration of bisphosphonate treatment. However, when treatment duration is analysed as time since first prescription, a statistically significant increased risk for hip fracture was observed in patients exposed to bisphosphonates over 3 years."
Now I understand that to mean that they don't do a lot in older patients... Or am I hallucinating?
What does the research show in preventing spinal fractures? That's my concern.
Hi there,
Personally, I would stay away from Fosamax. I believe there is a lawsuit right now against Merck pharm for not informing adequately of the risks. Read about their involvement with t-scores also.
I take a small calcium supplement that also has the minerals needed to absorb the calcium.
My new doc pushed Fosamax and also a blood pressure med. I researched the blood pressure med and found there were increased fractures with older people using it too.
Just using pred right now and on a wait list for a new doc.
It was amlodipine which is in the class of drugs called calcium channel blockers.
I am not saying don’t take it. Everyone’s situation is different. I don’t think it is the right drug for me. Also, I am the worst patient ever, I’m sure I have a big red dot on my chart😂
Hi, Karen I have been put on amlodipine recently because Atenolol didn't seem to be lowering my moderately raised, blood pressure. You prompted me to look it up and it says do not take it if you have Aortic Stenosis which my Rheumatologist told me yesterday that I probably have. I phoned the GP, she went away to read my notes and then rang back telling me to stop it. I always thought that you shouldn't stop these meds suddenly. Not for the first time, eternally grateful for the knowledge on this site!
Hi Eileen, sorry for hijacking your post. Karen mentioned a drug I am on and shouldn't be. I should have done a new post I guess. I was just a bit shocked to learn that here. Best wishes Jane
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Endocrinologist and Hydrocortisone
Not sure if I have PMR and my preds are not working
Drowsiness at 13.5mg Pred
What a silly disease! Before you taper your prednisone should you be almost pain free?
Still can’t get below 5mg Pred
